Kelly Quinlan has a first-hand understanding of how Oregon brokerage services help in establishing and maintaining a good quality of life for adults with intellectual disabilities. A prolific writer, with over 50 short stories and author of a self-published book of personal memoirs, Kelly is a vivacious 36-year-old woman known for her bubbly personality and unique style of dress, which includes wearing legwarmers year-round. She loves spending time with her best friend, playing board games and making movies to post on youtube. Energetic, with a great sense of humor and a variety of interests, Kelly says, “There is a lot of flavor in my life right now!“

But about 7 years ago, Kelly’s life was different. She was on a waiting list for brokerage services, and though she was connected with some social services like Section 8 Housing and Social Security Income, she did not have access to individualized supports for individuals with intellectual disabilities. “There was not a whole lot going on–working on my stories—but that was it. I was lonely without having any friends,” she recalled. When she entered brokerage services in 2008, Kelly was surprised at the variety of supports available, and pleased with how dramatically her life was enhanced. She now receives training in independent living skills, assistance with communication due to hearing impairment, support with social skills, and help with medical management. She uses two independent contractors and contracts with a day support activities provider organization for community inclusion. She describes her life as balanced and thriving, quite different from her adult life before receiving services. “If I just had funding for one thing, I don’t know what I would do. I would have to advocate and say, I need more funds for this,” Kelly says as she recounts her providers and lists her goals and support needs. “It would be hard if I didn’t get help.”

Kelly has found the design of brokerage services flexible enough to access services catered to her specific support needs. Kelly has severe food allergies, so was thrilled to find a provider who helps her shop, read food labels, find recipes, and cook. In the past, if she accidentally ate something she was allergic to, she said, “I would get really sick. And it does take me a while to get back on my feet after I am contaminated with the food that I am allergic to.” A favorite recipe she discovered with her provider is a gluten-free vegan clam chowder that “tastes like the real thing, only with coconut cream and sweet rice flour.” This brokerage service “really helps me out,” she says. Another unique service Kelly has access through the brokerage is the ability to attend the national Turner Syndrome conference each year. “I have Turner’s. I like to go to these conferences that happen every year. And the brokerage pays for that, which is really nice.” While Kelly saves money to afford a plane ticket and hotel room, her brokerage service plan covers the cost of her conference registration so that Kelly can network with hundreds of people affected by Turner syndrome and go to workshops and presentations given by healthcare providers and other professionals. Another part of her brokerage plan that Kelly states is very valuable to her is transportation services that allow her to get places she cannot access independently. The individualized services outlined in Kelly’s annual support plan are entirely unique, and as Kelly points out, different from other brokerage customers. “I live out on my own—not everyone I know lives on their own. Not everyone that I know has food allergies, not everyone I know has Turners, or the same kind of medical conditions. I don’t know anybody else that gets the same kind of services that I get,” Kelly says.

Part of Kelly’s busy schedule includes working at her uncle’s restaurant, Cheryl’s on 12th, where she spends about 15 hours per week. “I’m a dishwasher, that’s basically my title,” says Kelly, laughing. “I sometimes come out and help with washing down tables, bus tables, and sometimes I’m a hostess.” She says that she loves “working along side the people that work here…. to work with people that I’m familiar with. Most people know that I’m Eddie’s niece, so sometimes that’s when they really straighten up. And sometimes I do chuckle about that!” She prides herself on “the sense of accomplishment” that comes from helping at the restaurant. When asked what she likes most about her employment, she said, “Working. Just having a job. Being out in the community and contributing what I can do. And helping my uncle.”

Kelly is an avid user of social media. “I like posting all the stuff that I do, posting activities with On-the-Move, saying what I did at work… my family likes that I post things on Facebook so that they have a good sense of what’s going on.” She also posts personal memoirs and original creative writing on a self-publishing internet site, and makes short movies that she posts on her youtube channel. She observed that her interest in communicating her experiences through these different media increased as she has become more involved in her community, particularly through her community inclusion program. “When I started going to On-the-Move I thought, that’s interesting… this part is interesting to ME. And it’s something special that happened to me.” Having interesting, novel experiences that are independent from her family give her rich experiences that Kelly defines as key to a good quality of life.

When Kelly heard, in the spring of 2015, that there were possible cuts proposed that would negatively impact her brokerage and services, she decided to go to the state capitol to speak to her legislators directly. “It was really interesting, the building gave off the impression that I am big, large, and I mean business. I had never been there before. But inside it was more low-key and it felt like you can address your problems and someone will listen to you.” While there Kelly spoke to her representative about the importance of having people with disabilities present in the community, and how important it is to have community inclusion supports. “It’s good… being in the community with other people that are disabled. If you cut our programs, there’s not going to be any community living for people with disabilities.” She says she felt the advocacy effort was effective. “Oh, I definitely got some people’s attention. I was talking to a group of people!”

Excited to continue with advocating for individualized services and support for adults with intellectual disabilities, Kelly has already planned another trip to Salem and is joining the Board of Directors of a local Portland nonprofit. She said she would make the following recommendations to anyone just entering the brokerage system: “I would definitely tell them about On-the-Move, I would tell them that if they have any medical issues then tell your PA. If you need assistance with financials, speak up, don’t be shy, because that’s what they’re there for. When I first started, I wasn’t quite sure what to ask, or what was even available. I wasn’t quite sure if I could get help with learning how to cook, and what kinds of things would help me out when it came to community, things like that. The medical stuff is especially important,” Kelly says, referencing transportation services, adds, “and going to places that I cannot get to.” Having access to services that are uniquely individualized to her specific needs and circumstances has been life-changing for Kelly. “Yes, it’s really important!” she says.

You can read Kelly’s stories on fanfiction.net (fanfiction.net/u/37688/kellyQ) and wattpad.com (wattpad.com/user/kellyq204) and see her videos on her youtube channel (youtube.com/user/kellyq204).

This is the first of the Independence Northwest Customer Stories Project, an effort we’ve recently begun in collaboration with disability community leader Molly Mayo. We believe that hearing/reading the life stories of those who receive our services will deepen community understanding of the uniqueness of essential home and community-based brokerage services. As our system continues to wrestle with changes, we must keep the principles of self-determination front and center. There’s no better example of someone taking services and running with them than INW customer Henry Meece. You may recognize Henry from many of INW’s promotional materials. His face graces our Facebook page and several of our published documents. Henry is living quite the life and has a memorable story to tell!

Henry Meece has been a brokerage customer since 2009. He uses brokerage dollars to purchase Day Support Activities/Attendant Care, Supported Employment and Relief Care. His Personal Agent is Carie Shumway.

Henry Meece, a 25-year-old customer of Independence Northwest brokerage, can be found jam-skating at the local rink, paddling on a dragon-boat, competing in Special Olympics sports, snowshoeing, and snowboarding– when he’s not riding his skateboard to work. In March 2015, Henry was interviewed on ESPN after winning a gold medal in the 2015 X Games in the first unified dual slalom race, and in 2013 Henry’s athleticism took him to his birthplace of Korea for the Special Olympic World Games where he won a gold medal in slalom snowboarding. Henry has completed three marathons. He is proud of his athletic ability, and the interesting life that he leads. He thrives on a rigorous day-to-day schedule that he has shaped with the help of his mom, his brokerage, and his providers. He says his brokerage supports give him “something to do” and help him “stay active, make friends,” and lead an “independent life.” His mom says, “I would say of all the people we know, Henry is the most active.”

Henry was adopted by Nancy Newell and Ted Meece in 1990. His parents knew that Henry, an orphan from Korea, would probably have a disability. He began early intervention services at age 18 months and was in special education throughout school, graduating with a modified diploma when he turned 21. Although frequently in segregated classrooms, Henry experienced true inclusion in sports programs and “competed right alongside his peers” his mom states. But once school ended, without regular, structured activities, the family at first had no idea what Henry was going to do.

“Once a person is done with public school—there is nothing,” says Nancy. “It’s a very bleak outlook.” Luckily, due the advocacy of his mom and through the adult services he receives through Independence Northwest brokerage, Henry is gainfully employed and leads an active, stimulating, and productive life, which includes participation in two different community-based Day Support Activity programs. “Henry is active and integrated with these programs, but if there weren’t these programs… where is the natural inclusion?” Nancy asks. She said that policymakers should be educated about the lack of resources for adults with intellectual disabilities. “I know people that don’t live in the Portland area,” Nancy says. “These programs don’t exist in other parts of the state, there isn’t an On-the-Move, there isn’t a Creative Goals Solutions—and it’s not just Portland that has people with disabilities. It’s alarming!” And 10% of people experience a disability, she points out. She wants policymakers to understand that funding for services is vital to the life of people with disabilities after high school. “Without the funding there are no programs. Even if you could private pay, what would be out there?”

Brokerage-facilitated supports have been instrumental in matching Henry to meaningful employment. Using supported employment services, Henry has been able to gain significant experiences building an employment resume, and as a result successfully obtained two part-time jobs. He has worked at a nonprofit brew pub for three years, and at a fitness center for the past year and a half. “I like everything,” Henry says about his jobs, which total about 10 hours per week and pay minimum wage. “I want to get the money,” he says, to put into a savings account.

Nancy and Henry appreciate how brokerage supports are uniquely individualized to each person. But such open-ended options have at times made the system challenging to grasp. “It’s great to have individualized systems, but there is no uniformity,” which can make things confusing, says Nancy. “It’s a wonderful system, but how do you know about it? We’ve learned as we go along, and the information can be very difficult.” Nancy has found dealing with employment issues especially challenging, because when Henry earns an income, it affects his Social Security benefits and requires detailed documentation. “Everyone should work if they want to, and everyone should work if they can. But there are a lot of reasons not to work,” says Nancy, referring to the complex rules around earning money while receiving Social Security benefits. Before Nancy had a clear understanding of the needed documentation, which requires writing a letter to Social Security and submitting all of Henry’s pay stubs each month, she says, “I felt like a fool—the college educated mom! …You know we are doing just a bit more than waving goodbye—we’re orchestrating. We’re like an air traffic controller keeping everything in the air and trying to have everything land smoothly. So I think it is very hard to carry all this information around… and if you have one lapse,” there can be dire consequences, Nancy points out, such as the entire loss of eligibility for much-needed benefits.

Nancy and Henry describe their experience with Independence Northwest brokerage as smoothly functioning and “highly efficient. Everything behind the scenes works. The relationship between the brokerage and the providers seems to work really well. I have never had to be involved in a billing issue. Henry has never been turned away because papers weren’t signed. The relationship between the brokerage and the providers has been very strong.” Additionally, Nancy adds, “the PA [personal agent] will sit down with Henry in a way that he understands. I can be involved or Henry can get to the PA independently.” Henry has chosen to use Independent Contractors, small local agencies, and larger organizations for various services as his needs have changed throughout the years.

Nancy and Henry have begun to talk about Henry living somewhere other than his parents’ home in the near future. “These are not journeys that other people I know have taken, and the move might look different for everyone,” with options such as living in an apartment, finding a roommate, moving to a group home, or discovering other supported living opportunities.” When asked what he thought about living somewhere else, Henry said, “Good, because my girlfriend is talking about it.”

“All clients, all families are different,” says Nancy. It is clear that Henry’s unique challenges and talents could not be met with generic, non-individualized services. “It’s frustrating and complicated, yet I think it’s wonderful that all these supports are in place.”